The patient information seen here is based on material provided by histiocytosis specialists. It is written by representatives of patients associations in order to avoid medical terms. All information has been validated by histiocytosis specialists.


Patients diagnosed with histiocytosis start looking for information. Different sources and outlets provide a wide variety of factual as well as non-factual information. This can often be overbearing and hard to process.

ECHO strives to provide as much reliable information about Langerhans Cell Histiocytosis and associated syndromes as possible. In the Patients section, you will hopefully find answers to some of the questions that you might have about rare diseases and histiocytoses.

Due to the rarity of the disease, many health care professionals still have very limited expertise in diagnosing, treating and advising patients with Langerhans Cell Histiocytosis (LCH) or other histiocytic disorders. Many centres follow less than one LCH patient per year and never see any patient with one of the rarer histiocytoses. This must not necessarily lead to deleterious practice, provided that the treating physicians refer to expert information. They should be well aware of the problems which may occur, even years after a histiocytosis had been successfully treated. Furthermore, clinicians find it often extremely difficult to answer questions posed by patients and their families without using medical jargon.

In this webportal you will find different levels of information:

  • The contents for patients are written by patients for patients. They avoid medical terms and take into account that many concerned persons are afraid and therefore looking for other people who can understand their sorrows. They do not mention every small eventuality of the disease but give you a good overview of the important things you should know.
  • The contents for professionals are written by histiocytosis specialists for physicians. They contain many medical terms and mention a lot of possible threats caused by histiocytic diseases, even if they are less probable than being severely injured or killed in a car accident. Patients can access this information, but you should be aware of the fact that the course of most LCH cases is a good one.
  • The guidelines for professionals are written for treating physicians who have to consider the special circumstances of each patient.